Edel Shaw Laois Offaly Families for Autism (LOFFA)

‘Partnership Now’ A partnership is an arrangement in which parties agree to cooperate to advance their mutual interests. A partnership is a relationship between individuals or groups that is characterized by mutual cooperation and responsibility, as for the achievement of a specified goal:

As a Parent of a child with a disability who do I need to create Partnership with? Teachers SNAs Doctors Therapists Service Providers HSE Dept of Health SENOs National Council for Special Education Dept of Education Support Groups Politicians

What Parents are looking for? Simple? or Complicated? VERY Simple Support and Intervention which will allow our children to reach their full true potential

What are we met with?... EXCUSES Waiting Lists Lack of Resources Embargo on Recruitment Everyone looking for Assessment of Needs

What is the reality? 3 years waiting for Occupational Therapy 2 years waiting for Speech & Language Therapy 18 months for Psychology Lack of therapeutic support in ASD units / special school setting AON only way to get written information No Respite And if you challenge this? ……

Culture of Circling the Wagons

Response from those in charge? Suspicion - of parents who ask questions Arrogance – if you don’t like it complain Lack of Information & Engagement Sinister undertones – clinical outputs Differing answers at local vs national level - resources available local vs PQs Progressing Disability – another talking shop but excluding organised groups of parents

Effect this has on Families? Families crying out for help …….. Stress / Anxiety / Depression Children fall through the cracks Leave school early Don’t reach full potential Martial breakdown Siblings affected Reach out to support groups

Parent Support Groups - LOFFA 350 families in Laois / Offaly raise awareness of autism in our area and seek health, educational and support services that are appropriate to meet our childrens needs subsidised private therapies SLT / OT – 2012 €13,100 – 2013€11,678 – 2014€11,205

Is this our first priority? NO …. because our 1 st priority is as a PARENT

What do we want? Organisations to deliver on the services they are suppose to -- Stop making excuses Consistent standard approach across the country Respect Communication Information Openness